National pharmacare: Which drugs are essential?

Opinion: Canadians requiring expensive new medicines should not be forced to pay for the promise of national pharmacare by suffering and dying

Unless national pharmacare delivers the medicines that answer all Canadians' needs, people with rare disorders will continue to have to wait to access the new and innovative but often high-priced therapies that are essential for them.Getty Images/iStockphoto

The throne speech promised the federal government will “implement national pharmacare so that Canadians have the drug coverage they need.” But what kind of pharmacare will Ottawa introduce? How many drugs will be covered? Who will be covered? And who will pay?

The Liberals’ advisory council recommended national pharmacare initially cover a “carefully chosen list of priority essential medicines” and it mentioned two lists as potential starting points. Neither includes specialized therapies for such rare diseases as cystic fibrosis, sickle cell disease and spinal muscular atrophy.

Medicines for common illnesses are essential, and low-income Canadians should not have to choose between paying for them and other necessities. But novel drugs that significantly improve the lives of people suffering once untreatable life-threatening disorders are also essential. If your life is at risk, the medicine you need is essential.

In an open letter to Prime Minister Justin Trudeau, Chris MacLeod, a cystic fibrosis sufferer, wrote: “I had a health crisis and was on the verge of expiring and requiring a lung transplant in 2012. I received access to the drug Kalydeco and my lung function bumped from 30 per cent to 50 per cent and has stayed at 50 per cent. If I did not have an employer benefit plan and was forced to wait until Kalydeco was approved (as safe and effective) in 2014, I would have likely died well before the drug was approved for public reimbursement.”

New drugs like Kalydeco, which treats specific kinds of cystic fibrosis, are often expensive — many thousands of dollars per year — and require lifelong use. MacLeod has the benefit of what he calls a “platinum-plated employment benefit plan.” Without private or public insurance, these kinds of medicines will be out of most people’s reach.

Such patients have only two options: either plead with governments and manufacturers for access or pursue charitable crowdfunding. Denying patients access to new drugs for previously untreatable disorders condemns them to a life of suffering and/or premature death — their ultimate subsidy for our “health-care” system.

The throne speech was about intentions, not specific investments. The Liberals’ election platform, on the other hand, promised a down payment of $6 billion to be shared among national pharmacare and other initiatives. That is a lot of money. But it is just a drop in the bucket compared with the $40-billion cost estimated by the advisory council or the $50 billion projected by a tax consulting company for the Canadian Taxpayers Federation.

Most provincial governments are unenthusiastic about national pharmacare, which is hardly surprising given that Ottawa’s contribution to the $264-billion cost of health care is now less than 25 per cent. They want federal help to pay for high-cost specialized-care medicines, including those for rare disorders.

The federal Liberals, by contrast, believe improved access to high-cost drugs can be attained by increasing the powers of the tribunal that sets price controls on new medicines. They intend to reduce new drug prices by “40 per cent on average” which, in practice, means medicine developers may be required to drop prices by up to 70 per cent, perhaps more.

A reasonable price reduction should be manageable, but 40-70 per cent renders many business models unsustainable. In future, manufacturers will launch innovative medicines in Canada only long after doing so in other countries. Or they won’t bring them in at all. Wait times for drug access will be much longer, possibly forever, or — what is the same thing for suffering patients who need these drugs — until after their preventable deaths.

So far the only concession the Liberals have made with regard to expensive medicines has been in their 2019 budget, in which they promised $1 billion over two years, starting in 2022, to “establish a national strategy for high-cost drugs for rare diseases” to help Canadians with these disorders access to needed drugs. Using this money for politicians, government officials and other stakeholders to travel the country holding consultation meetings to develop a strategy would be wasteful. The Canadian Organization for Rare Disorders produced a well-defined rare disease strategy four years ago. Ottawa should use the money to implement it and start helping patients right away.

Unless national pharmacare delivers the medicines that answer all Canadians’ needs, people with rare disorders will continue to have to wait to access the new and innovative but often high-priced therapies that are essential for them. Canadians requiring these new medicines should not be forced to pay for the promise of national pharmacare by suffering and dying though these breakthrough drugs are available.

Nigel Rawson is president of Eastlake Research Group and affiliate scholar with the Canadian Health Policy Institute. John Adams is cofounder and CEO of Canadian PKU and Allied Disorders Inc. and volunteer board chair of Best Medicines Coalition.

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